Sidney Williams Suffered Surgery Awareness. The first thing Sidney L. Williams says he heard when he awoke in the operating room during open heart surgery two years ago was the insistent whine of a bone saw cleaving his sternum. As doctors began discussing his badly damaged heart, Williams wondered whether he was eavesdropping on his own death: The surgeon had warned him before surgery that there was a 50 percent chance he would die on the table. Seconds later, Williams said, he felt jolts of searing pain as the doctor shocked his heart, which had stopped.
“I once almost severed two fingers with a table saw,” Williams, 56, recalled. “This was much, much worse.”
Worst of all, said Williams, who lives in Austin, was his utter helplessness, his inability to let anyone know he was awake. Williams couldn’t make a sound: A breathing tube had been snaked down his throat. He couldn’t move a muscle: He had been given standard paralytic drugs that rendered him motionless during surgery. And he couldn’t cry: His eyes were taped shut and the drugs he was given stopped tear production.
“I remember just screaming and screaming, ‘This is killing me,’ but it was only in my head,” Williams recalled. “It was like I was being buried alive.”
Williams, who said he drifted in and out of consciousness during the three-hour operation, is a victim of an uncommon, largely unrecognized and often psychologically devastating experience known as anesthesia awareness, or intraoperative awareness.
Every year an estimated 20,000 to 40,000 of the 21 million patients who receive general anesthesia wake up during surgery because they are under-anesthetized, usually by mistake or because doctors fear too high a dose of anesthesia could be dangerous. Half of them, like Williams, can hear or feel what is going on but are unable to communicate what is happening to them because they have been temporarily paralyzed. Nearly 30 percent feel pain, studies have shown.
As a result of the experience, about 50 percent of awareness victims develop serious psychological problems, including post-traumatic stress disorder, experts say. Williams said he regularly relives his ordeal in nightmares so vivid that he has cracked several teeth grinding them in his sleep.
Last month the Joint Commission on Accreditation of Healthcare Organizations, which inspects the nation’s hospitals, issued an alert about anesthesia awareness, calling it “a frightening phenomenon” that is “under-recognized and under-treated.”
The commission called on hospitals to educate their staffs as well as high-risk patients about the problem; to take steps to prevent it by properly maintaining equipment and using “appropriate available monitoring technology”; and to devise policies that deal swiftly and compassionately with affected patients, including providing them access to mental health treatment.
Physicians and nurses “must balance the psychological risks of anesthesia awareness against the physiological risks of excessive anesthesia,” said JCAHO president Dennis S. O’Leary.
JCAHO’s action was prompted in part by a trio of studies published earlier this year about the frequency of intraoperative awareness which is estimated to affect one or two of every 1,000 patients receiving general anesthesia and the ability of newer brain wave monitoring devices to detect it. The alert, which is advisory, means that JCAHO will begin collecting data on awareness cases from patients. In the future, the alert could become the basis for new requirements hospitals must meet to retain their accreditation, as have previous warnings about preventing wrong-site surgery.
Unlike wrong-site surgery, which is well-known, few doctors outside anesthesiology had heard of anesthesia awareness until recently, even though the first recorded case dates to 1842.
“Until a year ago I wouldn’t have believed it if a patient had told me it had happened or known what to do about it,” said Robert A. Wise, a psychiatrist and former HMO medical director who is JCAHO’s vice president for standards.
Wise said he first learned about the problem last year when he received a call from Carol Weihrer of Reston, Va., founder of an advocacy group called the Anesthesia Awareness Campaign. Six years ago, Weihrer says, she woke up in an operating room at Washington Hospital Center while doctors were removing her diseased eye.
“I don’t think surgeons are tuned into it,” Wise said. Unlike anesthesiologists or nurse anesthetists, surgeons typically see patients for postoperative appointments. A recent study found that recall of awareness is greater seven days after surgery than it is 24 hours afterward.
Knowledge of the problem has been hampered by the reluctance of patients to tell their doctors about it, said Peter S. Sebel, a professor of anesthesiology at Emory University in Atlanta. “Patients often don’t report it because they’re worried about being called crazy by their physicians,” added Sebel, lead author of a study involving nearly 20,000 patients at seven teaching hospitals in the United States. Sebel’s team estimated that about 100 patients wake up every workday in U.S. operating rooms for periods ranging from a few seconds to much longer.
Anesthesiologists in particular have been loath to talk to patients about intraoperative awareness, which one recent study characterized as “second only to death as a ‘dreaded’ complication” among anesthesiologists.
Patients Sued Their Anesthesiologists
Lawyer Douglas Hornsby of Newport News, Va., said he has represented a dozen patients who sued their anesthesiologists for malpractice after they developed PTSD from waking up during surgery. Two cases that went to trial in Virginia resulted in jury awards of $150,000 and $350,000, he said. But other cases, including one filed by Weihrer, were settled secretly, on the condition that the name of the doctor, the size of the payment and in some cases the entire court file be sealed. (Weihrer said her anesthesiologist paid her a substantial settlement.)
“That means no one ever hears about this problem,” said Hornsby, who represented Weihrer.
Roger W. Litwiller, a Roanoke, Va., physician who is president of the American Society of Anesthesiologists (ASA), said that while his group is “very concerned” about intraoperative awareness, he thinks the problem has been “sensationalized” and considers the number of cases JCAHO cites to be inflated.
“These people are not specialists in anesthesiology,” Litwiller said of JCAHO, adding that anesthesiologists know best how to handle the problem.
In 33 years of practice, he said, he’s never learned he had a patient who was awake, nor have most of his colleagues. Litwiller said he worries that some of JCAHO’s recommendations, such as holding preoperative discussions about the possibility of awareness with high-risk patients, could scare them into not having surgery.
“Of course,” Litwiller added, “any patient who had an unpleasant experience in the operating room deserves all our compassion.”
To JCAHO’s Wise, professional denial stems from a “disconnect between patients and anesthesiologists,” who typically meet their patients minutes before they are wheeled into the operating room and rarely talk to them afterward.
“When I talk to anesthesia providers, they say, ‘It’s just a bad hour’ or ‘They didn’t feel pain,’ ” said Wise. “They’re not appreciating the potential for long-term psychological damage.”
Leaders of the American Association of Nurse Anesthetists (AANA) tend to view the problem differently. In 2002, the group published “Silenced Screams,” a graphic account by patient advocate Jeanette M. Liska of her 1990 abdominal surgery.
Tom L. McKibban, immediate past president of the AANA, said he considers intraoperative awareness to be “a patient safety issue.” The JCAHO alert “has everyone’s attention, and that’s a good thing.”
For patients, waking up during surgery can be shattering.
Victims of the worst cases compare it to torture. Sebel’s study found that about half of awareness patients report that they cannot breathe, usually because they are intubated. Some people reported that they thought an accident during surgery had left them paralyzed.
Some patients are so traumatized that they avoid doctors entirely and vow never to undergo surgery again, psychiatrists say. Others suffer from flashbacks and panic attacks triggered by the smell of rubbing alcohol, the sound of metal on metal, which reminds them of surgical instruments, or the sight of surgical scrubs on a TV show.
“This struck me as the most virulent form of trauma I have ever seen even worse than rape,” said Bessel A. van der Kolk, a professor of psychiatry at Boston University School of Medicine and a PTSD expert who co-authored a study of awareness patients.
A chief reason, he said, is “the paralysis and total helplessness, the fact that people are doing things to you in an environment in which you’re supposed to be safe and patients overhear nasty comments.” In her book, Liska described hearing her surgeon make comments about her breasts while enduring pain that she said felt “like a blowtorch.”
Anesthesia awareness has multiple causes, studies have found. Sometimes it is the result of defective equipment or physician error, such as failure to accurately calculate the dose of a drug or to check whether a machine is working properly before surgery starts. Other cases occur when anesthesia is lightened too early at the end of a case “to facilitate operating room turnover,” according to JCAHO, or when an intentionally light dose is given to a cardiac or trauma patient for fear that too much anesthetic could be dangerous, even fatal.
Robert J. West, an Austin lawyer who is representing Williams in the malpractice case he filed against his anesthesiologist, said he does not know why his client was under-anesthetized, “but his condition certainly had some role.” Williams, who was undergoing surgery for a defective mitral valve, has congestive heart failure. In court papers the anesthesiologist denied Williams’ allegations.
General anesthesia typically consists of three kinds of drugs: a paralytic to prevent movement; a hypnotic gas or intravenous drug that renders the patient unconscious and unable to remember what happened or to feel pain signals; and a painkiller.
Doses are calculated based on a variety of factors, among them body weight, body fat and medical history. Alcohol, obesity and certain drugs can affect how much anesthesia is necessary. As with all medications, people metabolize anesthesia at different rates, said Emory’s Sebel.
It is the job of the anesthesiologist or nurse anesthetist to continuously monitor the patient’s condition through vital signs including blood pressure, respiration and heart rate to ensure the patient is unconscious, stable and pain-free.
But these signs can be imperfect markers, doctors say, because beta blockers, along with other drugs, can depress blood pressure or affect heart rate. A patient who wakes up during surgery might not show a jump in either sign, anesthesiologists say.
Some doctors compare the situation to flying through fog: A pilot relies on instruments and expertise, but can’t see clearly.
“Anesthesiologists think they can measure the depth of anesthesia, but there are times when this is not true,” said Mohamed M. Ghoneim, a professor of anesthesiology at the University of Iowa. “It’s really difficult to measure, especially in light anesthesia such as cardiac cases or trauma with lots of blood loss.”
The best way to detect whether a patient is sufficiently anesthetized is by using a specialized EEG machine that monitors brain waves, said Ghoneim. He predicts such monitoring will become the standard of care in a few years.
Ghoneim said he routinely uses a bispectral index (BIS) monitor, a device JCAHO officials say they consider promising. The Food and Drug Administration, which first approved the device in 1996, last year authorized manufacturer Aspect Medical Systems to market it for awareness reduction. Earlier this year two prospective studies involving more than 7,000 patients found that the monitor, the leading brain wave device on the market, reduced the risk of anesthesia awareness by about 80 percent.
Many anesthesiologists and nurse anesthetists have resisted using the BIS and similar monitors because the devices have not been “peer-vetted” by their professional societies. Many say they consider the clinical judgment they exercise monitoring vital signs to be a better way of gauging whether a patient is awake than using a brain wave monitor.
Among them is Litwiller, who said a task force composed of ASA and AANA members is studying the issue and may make recommendations late next year.
“This problem should be solved by good science, not emotion,” he said. “Good science takes time.” Awareness is a problem that “has been around it didn’t just pop up yesterday.”
Psychiatrists say that when doctors minimize or deny intraoperative awareness, patients tend to suffer more severe psychological problems. Numerous studies of malpractice have found that doctors who stonewall patients after a serious injury are more likely to be sued than those who are forthcoming.
“The unexpected awareness is traumatic enough. But when the patient tells the doctor what happened and he says it couldn’t have, that’s a secondary trauma,” said Frank Guerra, a board-certified anesthesiologist and psychiatrist at the University of Colorado School of Medicine.
“The anesthesiologist told me I must have been dreaming, I couldn’t have been awake,” said Jodie Stanley, 67, of Rainbow City, Ala., who said she woke up sobbing in the recovery room of a Gadsden hospital after outpatient hand surgery last January.
Stanley, who had worked as a cardiac nurse in the same hospital for years, said she later learned that her vital signs, including her blood pressure, never spiked even when the surgeon made two incisions in her palm, “which felt like he was using a red-hot blade.”
At the urging of her family and alarmed by her inability to stop crying, Stanley said she consulted a psychiatrist who seemed clueless â€“ or skeptical. “She asked me to rate the pain from 1 to 10 and I said, ‘Start at 1,000,” said Stanley, who said she has undergone numerous other surgeries at the same hospital, including cardiac bypass. “After she asked me if it hurt like a paper cut, I stopped going.”
Williams, the Austin heart patient, said that when he told a nurse in the recovery room he had been awake, she told him he was mistaken until he recounted conversations and told her where different members of the medical team had stood.
He said the nurse then summoned the anesthesiologist. Williams said the doctor seemed unconcerned and told him, “It’s nothing to worry about, these things happen all the time.” He said he overheard the anesthesiologist tell the nurse Williams “won’t remember anything tomorrow.”
Dismissive reactions are not uncommon, said Colorado’s Guerra. Anesthesiology, he said, is a specialty that attracts doctors who don’t tend to think in psychological terms or spend much time with patients. “I have tried to teach anesthesiologists that when awareness happens they need to lean into the problem and make themselves very available to the patient,” he said. “In the real world, the anesthesiologist gets freaked out and runs away from it.”
Van der Kolk, a psychiatrist, said the apparent lack of concern reflects “part of the culture of medicine to minimize the suffering people go through.”
Patrick W. Clougherty, chief of anesthesiology at Inova Fairfax Hospital in Virginia, said his approach is different. In the past five years, he said, 10 cases of awareness out of 200,000 surgeries have been reported at the hospital; two occurred this year. None has resulted in a lawsuit, Clougherty said, and all were investigated and handled with compassion.
Clougherty, who is past president of the Virginia Society of Anesthesiologists, said brain wave monitors have been installed in Inova’s operating rooms, and his department is developing policies about their use by its 100 anesthesiologists and nurse anesthetists. He said he expects to have the policies in place by April, when a JCAHO accrediting team is due to make a scheduled inspection.
Clougherty’s interest in the issue is colored by an experience he had as a resident 20 years ago, when a patient told him she had awakened during bowel surgery but felt no pain.
“I was absolutely shocked,” said Clougherty, who subsequently discovered he had used too little anesthetic gas. “I basically resolved that would not happen again.”
“The last thing I would want myself or a family member to undergo is what these people describe,” he said. “You could just imagine that would be the worst possible outcome.”